Pieces of the Puzzle: Connecting with Autism in Brazil

A child with ASD (autism spectrum disorder) hides from the camera after completing his lessons at the Association of Friends of Autistics. With Brazil's winter break in session, he is one of the few children seen in the education facility. Image by Amanda Michelle Gordon. Brazil, 2018.

Much of Sao Paulo is covered with graffiti, but some of the art is more politically minded than others. Pictured is a young girl reaching for the sky, books replacing the clouds. On paper, education and training are available to the people of Brazil, but not everyone can obtain it. Image by Amanda Michelle Gordon. Brazil, 2018.

July 9, 2018

The city of Sao Paulo is said to be the economic heart of Brazil. This world city ranks as the largest Portuguese speaking population, and the 11th largest city by population.

Being that I hardly speak the native tongue, it would be an understatement to say that there is a language barrier. Thankfully, I have a friend to take me to see some parts of the city like a proper tourist before I start my assignment.

We walked around Ibirapuera Park. Within the park there are vendors, museums, and sculptures—it quite honestly seems just like anywhere else in the world. Except that people can walk around town with a beer in hand.

Today was the 86th anniversary of the start of the Brazilian Civil War, and it’s revered as a major civic holiday. Establishments were closed or shut down early, but due to the World Cup and Brazil’s team being knocked out of the running, I can’t help but wonder if the team had still been around if these places would keep their doors open.

Speaking with some of the locals on this, most were upset by the loss, not just for the World Cup, but because in Brazil, on the days when there is a game with Brazil, everything shuts down so people can watch the game. SO:

FRIDAY: Game day: no work

SATURDAY/SUNDAY: Weekend

MONDAY: Holiday: no work (mostly)

TUESDAY: Game day

—But Brazil lost, so Team Brazil failed to deliver a five-day weekend, or that is the main conversation point anyway.

Football aside, two things caught my eye from the start of this trip that I may investigate if given the time.

The first being graffiti covering nearly every building, skyline or not. The second is the homeless population. Even the metropolis has no cure for the hungry and poor. The extreme gap in wealth is disheartening, but it reminds me of New York City, where the sidewalks are lined up with beggars and addicts. Parts of the region are referred as Crocolandia, or Crack Land. Everyone tells me to stay away. If I had security, I’d investigate I think, but I came here to see how autism is handled, not drugs.

Maybe next time.

July 10, 2018

I slept for nearly 11 hours. I’m not proud of this, but I needed the sleep. My overnight flight had children who insisted staying up the whole time, and who kept me awake with them. My fixer Marina arrived in Sao Paulo today and we went over the game plan.

In addition to contacting centers that deal with Autism, we went over the possibility of stories concerning the graffiti, which can be broken into two classes: murals and pixacao, angry graffiti—which apparently is inspired by Metal music. A pretty hardcore thing in my opinion, but I digress.

I held intentions of taking advantage of the shuttle services, but my stomach seemed to not appreciate the food I’ve tried so far, even as delicious as it is.

July 11, 2018

Today went better than I could have expected. Meeting Marina at the nearby shopping mall it is very clear that Sao Paulo is modern and similar to western societies in many ways. After sending out some emails and having lunch served cafeteria-style we made our way to Memorial de Inclusia.

I was able to interview educators at the facility. As an American I am surprised at how warm the people of Brazil are to strangers, and foreign strangers at that. The two workers I spoke with, Helio and Bruna, were able to set us up with additional contacts, including a family with an autistic son.

Within the memorial I’m told that compared to the rest of Brazil, Sao Paulo is the most progressive when it comes to disabilities in general. The center didn’t have information strictly on autism, but it did give me a better idea about how those who are disabled are treated.

A secretary for the government and sociologist Silvana Gimenes spoke with us on the issue of autism.

“Of all the disabilities, autism is the one that Brazil is most ignorant of,” said Gimenes. With no physical display of a disability, it can be difficult for society to understand or accept the issue.

As someone who has been diagnosed on the spectrum, I can understand the stigma.

Mothers seem to be the driving force behind bringing progress to Brazil on autism. Again, I feel a connection to Brazil’s autistic population, because it was my own mother who sought assistance for me when I was showing signs.

The staff of the memorial is aware of a museum in Buffalo, New York, that focuses on disabilities in America. I do plan on making a trip to Buffalo, and when I do, I promised to serve as a bridge between the Buffalo museum and theirs.

July 12, 2018

As an American, I curse my education system for not instilling a second or third language in me by the time I graduated high school.

Having spent 15 minutes trying to ask for someone to take my meal tray away from the previous night, I felt rather ignorant whereas prior to the flight down I thought myself worldly. Should I ever take up another language in my adult years, Spanish is the language I’ll take up. Portuguese is the main language of Brazil, but it is the only place in South America where it is the official language.

On top of that, learning Spanish would not only be beneficial for future travels, but for life in the States as well. Contrary to popular belief, American is not a language and the United States has no official language.

I spent the early afternoon seeing some of the graffiti in Batman’s Alley, named because at one point in time it was a dark place, but seeing it today it was full of art and color. I felt foolish interviewing an artist on what he thought of the street art. But it was fun to see.

We also sat down with a public defender today, who went over the legal situation of those who have disabilities. While there are reasons to be optimistic for progress, the reality is harsh.

Laws are set in place to ensure education for those who are autistic or hold other intellectual disabilities, but they do not actually guarantee the education. Twice I’ve heard now that the autistic population is not going to learn because they do not learn. I am frustrated with the state of things here and count my fortunes of being born in a country where I could actually be given the vital attention necessary to combat the learning disability in my early years.

July 13, 2018

My first day here was filled with optimism that the country was improving for its autistic population. Today, my emotions on the issue were mixed. I had two interviews. One with Marie Alice, a strong advocate for the autistic population in Barretos whom we interviewed over the phone but then met briefly at the end of the day. The other was Dr. Estevão Vadasz, a prominent specialist in the field.

Marie proves to be a strong and positive model in this story, working in the municipality of Barretos with the autistic population. Currently in Barretos there are 48 children (ages 2-14) confirmed to be on the spectrum, and because of advocacy efforts, each child can receive one-on-one interaction with teachers who specialize in autism while still being able to remain in the classroom with their fellow peers who are typical students.

Marie says that she has seen progress in the students, especially in those who get attention early on. The students also are able to learn and develop skills for the workforce according to Alice—something that hasn’t been the case in earlier interviews.

For Estevão, there is not as much optimism on this issue. To put it simply, there isn’t enough of anything to aid those affected by autism. Not enough resources, programs, specialists, or money to improve what little there is or to create new programs. Most of all, there isn’t enough awareness of the issue.

Estevão believes that if there was a movement or campaign to raise public awareness on the crisis things could improve. I’m unsure if my reporting can help in this case, but I want it to. I know as a reporter I should be objective, have no bias, and take no side, but I want to alert the world and all those who can help to give what they can to Brazil.

It could be worse though according to Estevão. Argentina and France are reportedly still using psychoanalysis to treat autism. Should I focus my writing career on unveiling how the world treats autism, maybe I will seek out France or Argentina.

Given my own history with being diagnosed on the spectrum, Alice has invited me to return to Brazil and speak about my experiences with it—to help be an advocate for her cause. I want to. I’m not sure how I feel about this country yet, but I want to help however I can.

July 14, 2018

While today was one of the shorter working days, it was a heavy day. We traveled to the outskirts of Sao Paulo to the municipality of Osasco to meet with a mother of an individual who is autistic.

Sonia Correia de Freitas is a strong and independent woman, who reminds me of my own mother because of this. She took a risk letting us into her home to speak about her son, and she admitted to being hesitant about this, but she realized that speaking to us could help raise awareness and bring help to others in Brazil.

Her son, Heverson, is 36 years old and his case is very severe. Maybe the most severe I have ever seen. He is very sensitive, and our conversation is almost at a whisper.

As I interview Sonia, Heverson quietly sits on the landing of the staircase—I’m told that it is his place for everything, meals, television, and where he sits.

His hands go to his eyes to press on the sockets. Sometimes one of his sandals will slip off, or he’ll pull it off to slap against a stair. At one point in our conversation Heverson slaps the wall behind him. It’s his way of telling us that he knows we are talking about him.

In my mind, Sonia is the heart of this story. She’s so much stronger than I could have anticipated. She divorced her husband because of his attitude towards their son. He could not accept Heverson as his own, and gave their older son, Phillip, all the love and attention.

At the age of 58, she should be retired, but given the circumstances, she is unable to do so. In order to retire, one must be registered to receive a pension, something she was unable to do at her previous work. She continues to work in a new job, but since it is a young company they don’t have the money to register their workers. She works without the benefits to provide for Heverson.

While she is at work, Heverson attends a school, AMME—it roughly translates to Special Mothers Guardian Association. There Heverson is placed into a classroom with others with autism. His case is the most severe of his classmates, but Sonia assures us that he loves going to school, and that she saw improvement in him since he started attending this school, 16 years ago.

They provide meals, attention, and lessons. Lessons that brought speech to Heverson for a brief time. He could say words like “ball” and “yes,” but after Sonia had an argument with a family member, Heverson’s progress reversed and he hasn’t spoken since.

While AMME is a good resource, it has come close to shutting its doors before, and as Sonia grows older, the future for her child becomes more frightening. I have not heard of any program or organization yet that takes care of older autistic individuals. I’m terrified to know the answer myself.

Seeing the reality of autism at this level makes me want to march into every politician’s office and demand more programs and to force the wealthy Paulistas, who take helicopters to avoid traffic, to give their money to the schools, universities, and programs to improve and create more outlets for families like Sonia.

But Sonia remains positive. She draws her positivity from her religious beliefs and from places like AMME. I think Brazil needs more women like Sonia. I think the world needs more people like Sonia.

July 15, 2018

It’s Sunday and any place that would be beneficial to my article is closed today, so it is off to the Museum of Immigration. Again, I see similarities between here and the United States. From the early 1900s to the 1940s, people from around the world traveled to Brazil to find stable work so that they could make a life for themselves.

I wish the museum had something on the current status of immigration to the country, but it was enlightening to see a place that embraced mixed cultures becoming one people. Mind you, racism is still a thing that exists in Brazil, but as with most major cities of the world Sao Paulo is more liberally minded in that aspect than more rural areas.

This extends to the LGBT community. In public it isn’t rare to see a gay couple holding hands or any other display of affection. At any point of the day a couple can be seen kissing or making bedroom eyes at one another. This surprises me due to how religious the country of Brazil is overall. Again, I am aware that it is a more open region, but am still no less shocked.

July 16, 2018

Today I interviewed a company that almost entirely hires those on the spectrum, focusing on individuals who are on the level of Asperger's Syndrome or high functioning autistics. While the company isn’t Brazilian grown, the fact that a place such as this exists at all in Brazil gives me hope for the future.

Specialisterne, a Danish company founded by Thorkil Sonne, harnesses the untapped potential of autistic individuals in the workforce. Sonne’s son was diagnosed with autism as an infant, but as a child his son was able to draw a map from memory, a map that had well over 500 names and numbers. This level of attention to detail is something that can benefit companies in the realm of IT, programming, or other technology-driven careers.

The company is very progressive when it comes to the idea of neurodiversity. Again, while not Brazilian by birth, the Brazilian office can help spread awareness all the while employing autistic individuals who are often overlooked or waved aside with the assumption that they are unable to perform in work environments.

Following that interview I met with Dr. Maria Rita dos Santos e Passos Bueno, a leading genetic researcher for autism. Our time was short, but she answered some of the questions I had about increasing inclusion.

One of the most iconic pop culture themes of Brazil is the cartoon comic book character Monica, and while there is only a limited-edition comic that features an autistic character, it’s a start towards something. Realistically change doesn’t happen overnight. It takes years of activism, persistence, and involvement to make such movements happen.

What shocked me more than anything else in that interview was what is claimed to be a common perception among Brazilians on autism. Some believe that autism is caused by the mother, by being cold-hearted. This stigma developed at some point in the 1980s, and a lot of lovely stigmas seemed to have developed in that magical time period, yet the public allowed big hair bands to rule pop culture. Not sure your readers will get the allusion to big hairbands.

July 17, 2018

My final day in Brazil was one that has been long waited for. The first place I found while doing research on autism in Brazil was AMA, the Association of Friends of Autistics. Undoubtedly, it is one of the most important institutions to aid those who are in contact with the spectrum.

I was given a great deal of reading material on autism, all of it in Portuguese, but it was great to see available information on the disorder. Pamphlets, a CD explaining autism which was actually a product from Estevão, and a guide to autism written by Ana Maria S Ros de Mello, the founder of AMA.

Ana was able to clear up my questions regarding the Monica comic, and the answer was less inspiring than I hoped it would be, but it was an answer nonetheless.

Our time with Ana was brief—she had prior engagements—but I’m grateful for the time she could spare, and even more grateful that I was able to get a tour of their facilities.

The classrooms were all empty. Save for one room with a child. Sadly, I was not able to interview the boy, or even get his name, but I can’t blame anyone for forbidding it. Without the family's consent to an interview, I’m not sure I’d be able to write the material anyway. I was permitted to take a photo however which will serve just as well.

AMA has a strange charm on the property. The bare rooms have few items taking up space, but it’s the art on the walls that catches my attention. Drawings which are cast into frames hung for all to see.

I wish I could have been here sooner, or that there was more life within the building, but I’ve gathered more information on this trip than I thought I could.

After paying my dues I leave for the airport, my flight isn’t until well after 10 p.m., but San Paulo's traffic is infamous, and I refuse to miss my flight over it.

What could be a 40-minute drive turns ito a nearly three-hour crawl, but I still get to my gate with plenty of time to spare.

Conclusion

I’m hoping that I have met the key figures who can be the driving force for the better, because it’s obvious that at this time the government and the rich aren’t doing anything to help this issue. I know I may come off as too critical in this arena, but when the wealthiest 10 percent hold enough money to take helicopter rides just to avoid the city traffic, they could clearly afford to assist in charities or causes. Meanwhile, it’s nice that the government creates laws to assist those in need, but the written word means nothing if there is no plan of action.

I full-heartedly believe that spreading awareness and generating a positive response to the issue is one of the best ways to create great social change.

Art

Film, music, television, comics, and yes, even graffiti, can help end the stigma because of their ability to reach masses upon masses of people. In the United States, some companies are making changes to be more inclusive on this issue—like Sesame Street, which has introduced an autistic character, Julia, who displays autistic tendencies. The park is also reportedly undergoing some new changes to make a better experience for families with autism such as training procedures and quiet areas to help decompress, as amusement parks tend to have a lot of stimulus.

If there is anything I learned about Brazil during my stay, it's that there is no short supply of compassion. If autism can break into the media in a positive format, I believe that the people of Brazil can help change living with autism for the better.